Ok i have had relapse remitting MS since 2007. My last 2 mri scans showed that the disease was active and i had 2 new legions on both my brain and spine. So obviously my mind jumps to the worst possible out come when i got told by tge consultant i now has secondary progression MS. So while all this is going i get told go to your ms nurse to discuss new treatment and i am going to be on Cladribine. Si after about a week or so of feeling my world collapsing 8 find out, from the MS nurse that i was alway secondary progressive MS as that is just another name for it. The things you learn, but all being well with my bloods and chest x-ray i will be om cladribine. Sounds powerful stuff as it was discovered during leukaemia treatmeant or trials. I am thankful for getting taken off of tecferdira (spelling i know is possibly wrong) but why couldnt the doctor just say “your disease is still active so we are putting you on stronger medication but you are still in relapse and remitting” so if amone else gets told thst their disease is profressing to secondary progression MS. Just ask is it still relapse and remitting, or maybe i am just a big baby lol
Ah Paul, that is a lot to take on board.
Hopefully when you start this new medication things will settle down for you.
It is a minefield all the different info we get.
Take good care of yourself
much love
Maryx
Thanks Mary, the drug is better known as mavenclad but whilst typing the original message for the life of me i couldn’t remember, so googled nhs and MS drug. While what i had typed was correct it is better known as mavenclad. So a week of drugs to strip my immune system down to 0%. Or to be more accurate strip a part of it down to 0%. So just wait for me to be moaning and complaining of sore stomach and having a total bitch of a cold…my wife is a primary school teacher. Just waiting on my cgest
chest x-ray results to start treatment
You are more than welcome to moan as much as you want/need.
Hopefully everything settles and this becomes the new norm.
Keep us updated and take care.
Much love
Maryx
Good luck and keep posting as I think all the information we get is rubbish.There is no real support.Its crazy we have to rely on reading others experience s but we do .So take care and hope it goes well.
Hi PaulMcGaw, Firstly good luck with the new meds, I really hope they help you
I was diagnosed in February 2007, I was told at the time I properly had MS since 1990 when I was 30yrs old and had a bought of Iritis, the years in between I just got on with my life, having what I would call, insignificant symptoms, fatigue, a few balance issues and a few other bits, but they never stopped me doing what I wanted to do…zoom forward to 2006 and things really kicked off, my MRI scan showed multiple lesions on various parts of my brain and a couple of smaller ones on my spine. From Febuary 2007 I was monitored for about 18mths, because they weren’t sure which label to stick on me, I wasn’t having what they termed as relapses, but I was going down hill, so eventually was told I had SPMS and there was no DMD’s for me. Now I’m a full time wheelchair users and have a lot of other issues which I bore you with, some of us can get DMD’s and some of us can’t
Take care of yourself and again good luck.
Jean
Thanks guys i will let you know when and if i start it. All bloods came back just waiting on the results of my chest x-ray. I am 99.9% sure they will be ok but you never know. When i start them i will keep you posted.